January 2010 Blog Posts (21)

I took a walk with Jesus, yesterday. The thin layer of melting white snow crunched under our feet. I shivered from the January north wind and pulled my collar tighter around my neck. Feeling happy, I had chosen boots to wear for our walk. Jesus walked only in sandals and a white flowing robe of cotton. We walked in silence for some time listening to the sounds around us. From the trees above our heads birds could be heard chirping and some children’s laughter echoed… Continue

Duchenne Israel held its first conference on Tuesday evening. Professor Yoram Nevo, the leading pediatric neurologist and CINRG director opened the meeting with a discussion about his efforts to combine Losartin and Copaxone as a potential substitute for steroids. He has data on each compound and will now test the combination in the mdx mouse. 60+ family members, doctors, researchers, and healthcare professionals attended the meeting. The room was filled – over 60 family members, doctors,… Continue

On January 9, I ran the Disney ½ marathon in Orlando. Well, ‘run’ may be a loose term, I walked, but I walked fast enough to complete the race in the required time, crossing the finish line, greeted by a wonderful volunteer holding the coveted Donald Duck medal. It was my third marathon.

I started walk/running in 1984, just after the word Duchenne entered my vocabulary. I was running for something, my own private marathon. I walked for my sons. I wanted to take steps for them, wanted… Continue

Sunday, October 4, 2009
If you dare come have a closer look, I smile because;

Cody stood for me today again. I pulled him to a standing position from his wheelchair, wrapping my arms around him, to help support his balance. While it was brief, a mere 10 seconds, I embraced the strength he found in his failing body. He beamed. His beautiful smile touched me so deeply.

As I sat him down again he excitedly said "see mom, I can stand for you". Yes he did. That was all I… Continue

Watched the boys swim today. If only we were fish, or a species of man that lived in water. Cody would be walking. I love his independence and confidence in the water. I see so much of him come alive as he becomes weightless. I see him use muscle that otherwise seem to be of no use. Swimming is truly a benefit to his well being.

Josiah has came such a long way from when he first began to go under water. The fear in his eyes has totally vanished, replaced by a confident smile as he… Continue

Snow was on the ground when we awoke this morning. A lite dusting had appeared in the night. As I opened my door to let out the dog a sharp sting could be felt from the wind. It Seemed our seasons had truly changed. The trees were much bearer. On the ground laid massive piles of leaves that occasionally were whirled around by the cool autumn wind. Outside indeed was different.

With this new season I wondered would it bring along change for us. Change that we would embrace. Change… Continue

Sunday, October 11, 2009
Josiah my youngest became ill this evening. Seems a strain of a virus has interupted our lives. While I held Josiah in my arms this evening he fell a sleep. At last a moment of rest for his fatigued little body. He breathed deep with a kind of half snore and was beginning to feel warm to the touch. Rest was good and needed.

Tenderly I ran my fingers through his hair gently stroking his forehead every so often. My thoughts drifted away from the movie I… Continue

Wednesday, November 18, 2009
Waiting can be so difficult. It seems as though I have spent much of my life consumed with waiting. While my life will still be filled with periods of waiting, none will be has difficult as the past 15 years.

Today Wednesday November 18 my middle son Cody has begun the first stages of participating in a study for treatment of nonambulatory DMD patients with ataluren Cody is the first child to take part in this phase of the study in the world. The… Continue

My oldest son Zach told me about a story of Internet bullying this evening. It was a story of a young man in high school that had been a victim of Internet bullying, tragically it lead to his suicide. He had kept this abuse hidden from his family and apparently his friends. For they too were not aware that it was troubling him so deeply. One evening his parents found him hung in his room. His tragic story now a topic of discussion on line. My heart ached at the thought of someone feeling so… Continue

t was a delight to spend a warm hour watching my boys swim today. Outside the frigid artic air brought the temperature to zero for a high. Enclosed in this glass room we could see snow all around us but the air felt almost tropical. Cody and Josiah with their newly appointed grandma/friend and swim assistant Janice laughed and splashed while stretching their limbs. I have spent a good part of my life trying to bring special people into my sons lives. When physically challenged, playmates are… Continue

Cody told me today" not being able to walk sucks".
I saw some new anger in him I had not really noticed before. He wanted new batteries for his WII remote control, which just happened to be upstairs in the kitchen. I asked him to wait while I finished assisting his brother. Josiah had been building with Lego's and was feeling his own sense of dependency from Duchenne. He had been struggling to open some new packages of blocks. Lacking the strength to pull open the plastic sealed bags by… Continue

There is a very excitement news on StemCell Theraphy being currently done in Mumbai ( Bombay , India )
I just got back from Bombay & I meet the DMD Boy age 24 who under went Stem Cell treatment in August 2009 and he is doing very well.

I would like to ask someone who is well connected to stem cell research to give us all some update on stem cell.

As I spend time on the community site and Facebook, I feel a little jittery. Expectations are high. Everyone is counting days and everyone seems to have a different calendar, a different opinion, and a different bit of information. Some have contacted a clinical center, asking how to get their son in a certain trial, wishing to be first in line. Others have gotten less than expert opinions on genetic testing and the potential ability to participate in an upcoming… Continue

Bradley sprained his ankle on Sunday. He was sledding and jammed his right foot into a tree. We waited a couple of hours to see how things would go. In the meantime, we applied ice and he layed on the couch. Tom had to carry him to the bathroom during that time because it hurt too much to bear weight.

I decided to take him to the ER at Memorial of Carbondale just to be sure it wasn't fractured. I thought it would probably be a…

I have a feeling my 7 year old tossed his tennis shoes because I can't find them. He told his grammy they went on vacation to California. He has gym class tomorrow and I had to buy new shoes. I feel very fortunate that my son can run pretty fast and will play coach pitch again this year. He picked out the shoes he wanted and ended up with the first pair he tried on. After I finished paying he said I'll be back...I had my head down putting change away and I looked up at the girl and said did he… Continue

Our son Gustin will be 18 years old on Friday, Jan.15. Thirteen years ago, 7 months after his 5th birthday we learned that he had Duchenne Muscular Dystrophy. We had no idea what the doctor was talking about when he told us he had it and what it was. It was the most devastating news! We went home and couldn't stop crying. Feeling the need to learn more we turned to our 1970 Encyclopedia and it told us most boys don't live beyond 18 yrs old. It hurt more than imagineable! As we looked at our… Continue

I'm going to attempt to write an update on yesterday's marathon. I say attempt because I am an emotional mess today. I think the last year has finally caught up to me. I spent all of last year putting all my efforts into training and fund raising for it. It feels so weird to have it behind me now. I almost don't know what to do with myself. Although right now, my body isn't all too capable of doing much of anything. LOL!!

One year ago today (Jan 9,2009) was the day that my world seemed to stop, I was punched in the stomach and my head was spinning. I was being told that there was no HOPE for my sweet baby boy! Diagnosis Day (a day I will never forget).

Over the last year, I've learned 2 things.

One thing I've learned is when someone, a doctor, someone who is supposed to help people, says to you, "I'm sorry there is nothing we can do, all you can do is take him home and love him." DON'T TAKE… Continue

It is probably safe to say, you have heard of Kathryn Wagner, M.D., PhD. She is one of us, one of those doctors who wraps a protective arm around her patients and families, always thinking about what could or should be done to protect and preserve function and to ensure quality of life. You may know her from John Hopkins where she is an Associate Professor of Neurology. At Hopkins, she concentrated her energy on neuromuscular and neurogenetic diseases with a special emphasis on hereditary… Continue

PPMD is growing. We have an amazing Board, an equally amazing staff (commonly referred to as the Cult), and a wonderful community. So what should be the logical next step? This has been our conversation for the last year. It is easy right? Add staff. But as you begin to think of who that person might be, you start to develop a wish list, naming all of the qualities/skills you are hoping to find in a person. And then there is Duchenne. How do you explain Duchenne to someone who has no… Continue